My Decision . . .

I wanted to write and share something in this post that is possibly the most difficult decision I’ve ever made.

Even as I write this my heart is beating fast in my chest.

I’ve spoken to some friends and family about this decision. Especially those who I believe will take it badly. (If reading this upsets you and you know me personally, please be in touch so we can talk. Anyone can be in touch.)

Before I continue . . . sharing this decision is not a cry for help.

Contrary to a cry for help thinking about and making this decision has given me a great deal of peace and lifted a HUGE load off of my shoulders.

I have decided that the next time in my life that I need to do dialysis – because my transplanted kidney will eventually fail – I will decide whether or not I want to do dialysis again.

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It will not be an automatic decision to do dialysis. I will look at my life – at that time – and decide if I want to do dialysis all over again.

Bear in mind a few things . . .

I did dialysis the first time in my twenties for three years. I am doing dialysis now – from late thirties into my forties – for the second time. I’ve been doing it since 2009. And when my next kidney transplant fails it will be my third time doing dialysis.

Also take into consideration. The type of dialysis that I prefer and that allows me the most freedom and flexibility in life is not an option for me anymore. It’s a modality of dialysis that can not be done indefinitely and my time was done in 2011.

Further, in my choice to do hemodialysis, I chose to use an artificial vascular access. (That just refers to the port that enables me to connect to the dialysis machine – so my blood can go through the machine and artificial kidney in it, that cleans my blood.) Having this artificial port will lower the chance of me doing dialysis in the future the traditional way – with an access that a surgeon builds in my arm, in an operation. A few doctors have told me that having this port for so long will lower the chance of me being able to have the port that’s built into the body. (In some way this artificial port damages my veins.) I have in fact lowered my chances of having other options. (Plus the other option requires needles and I have a very bad needle phobia.)

And ending my list, in order to be as healthy and well as I am, I committed to doing an aggressive dialysis schedule. It started off as a four month experiment but once my medical team saw how well I was doing it was decided that we should stick to this schedule until I get another transplant. Most people who do a traditional dialysis schedule of 12 hours a week. I do no less than 20 to maintain the benefit that I gained from starting this schedule. I saw the results with my own eyes and committed to sticking with this schedule despite the compromise to my quality of life. (Do more dialysis and feel better . . . but suffer in quality of life in expending a lot of time to do dialysis.) I am not sure I will want to make this sacrifice of time and energy ever again. It’s very draining and time consuming. In the same breath, I didn’t feel well enough on the traditional schedule so what are my options?

Looking at this list and these decisions I’ve made I am prepared to deal with the consequences. I am prepared to fight hard and do the work now but I will not do it forever.

The decision not do dialysis when next I have to face this challenge has given me a lot of peace.

That day may come and I may decide to fight and go the “third round” with dialysis but I am freeing myself from the pressure of having to do it.

This decision never occurred to me before. I think in the past I would have found this decision very selfish.

Now I see it as having control of my journey. 

My journey.

It will be sad to leave family and friends. And I apologize from now but my journey is separate from their journeys.

I have to live (and die) for me.

I am hoping that day will come and there will be new technology that makes dialysis easier. Or technology that eliminates the need to do dialysis all together. (Something implantable that mimics all the functions of the kidneys. Or our own new kidneys – grown from our own cells that our bodies won’t reject.)

Maybe it will be an era of my life so full with work and travel and love and fun that I decide to stick around??

I don’t know what that time will be . . .

And I don’t know when that time will be . . .

I should mention, in Canada the decision to discontinue or not to do dialysis isn’t considered suicide or euthanasia. It is considered a natural end of life decision. I’ve learned that I will have a lot of choice – even in death. And that I will be kept comfortable until I pass naturally.

In the meantime, my heart is hungry for life. (I don’t want to think about death yet.)

I’m not as rushed to get my new kidney. The sooner I have it the sooner it could be gone.

I have made peace that I could be making this decision in a year  . . . or in 30 years.

No one can guarantee how long a transplanted kidney will last. Some never work from the start. Some work for 40 years. My last kidney lasted me 13 years.

What I am PRAYING for is a healthy kidney that lasts me a very long time. 

I’m PRAYING that through good diet and exercise and good lifestyle (meditation, yoga, low stress) I can stretch out the life of my kidney transplant. That I can do all of the things to make it work well and last long. (When I get it . . . I don’t have it yet.)

I am PRAYING that technology improves. Better anti-rejection medications. Better advances in the care of people with kidney disease. Better practice. Better policies. Alternatives to dialysis with great outcomes and amazing quality of life for people with this disease. In my work as an advocate (in my way), I will strive to improve these things myself and not just sit and wait for others to do it. I will work hard to have bigger and bigger influence so I can improve the lives of my fellow patients – and my life too.

I feel like I have a lot of life in me.

There is so much I want to do; write, speak, love, travel, eat, pray, dance, laugh. I want to do it all.

I PRAY I get the time to do all of these things.

To get all the books out of me.

To get to see the world.

To get to meet people and live and learn.

I wanted to share this with you because I wanted you to know what ultimately motivates me.

Why I am trying so hard.

Why I am pushing myself.

Why I care so much.

I am leaping out on faith. I am putting my life (goals, dreams, ambitions) in God’s hands.

I am trying my hardest to do the work I believe I’m meant to do in this world  . . . and just concentrate on that.

I am the athlete out on the field that will give my all until I hear the whistle blow.

And once I hear that “whistle” I will decide – for myself – whether I fight and stay in the game (for a few more plays) or if I ask to be benched.

I hope you understand. (I understand if you don’t.)

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6 Responses to My Decision . . .

  1. Thank you for a good morning read. Making peace with our power and powerlessness in life certainly is the key to happiness.

  2. Bell, Daryl W. says:

    Hey Karen, I’m sure this was a difficult post to make. It makes complete sense to me and it gives you a way to be in control. I hope you never have to make the decision and that is just being naive and in denial on my part. I think you are wonderfully introspective and will make the best decision when you need to. I admire your honesty and your strength (even though you may not always feel strong!) I am here anytime you want to talk.

    Hugs Daryl ________________________________

    • It was difficult but also very cathartic and freeing. I feel a lot of peace. Thanks for your kind words and understanding. I will come and talk to you because I’ve had some other revelations and I know you will understand.
      Hugs back!!!!!

  3. Karen,
    I’ve been on hemodialysis for about 20 months, with a graft (my fistula failed before it was even used). Although I’m doing very well, having just been changed to merely 9 hours of treatment a week, I lived with and saw my father, who was also on dialysis (almost two years on peritoneal until he couldn’t do it anymore, then about five years on hemo) getting more and more tired, and getting older and older than his years. He, too, had been considering stopping his dialysis because he was so tired from it, but he decided he still had some living left to do.

    I’m not saying this to tell you not to make that kind of decision, but rather to say that I know it is not an easy decision to make. I will be facing that decision, myself, some day, when the treatments get too onerous for me, and the drain on my body doesn’t balance out with the benefits from treatments. I honor your strength to give yourself the permission to choose at the time whether or not you will go another round of dialysis. I hope your transplant comes through soon, and that you get a good one that works well with your body. I’m not really eligible for a transplant – in the US, you have to be under a certain weight or they won’t even consider you for the pre-testing testing, and the cost if you’re approved is horrendous. But when the time comes when you have to assess your life on dialysis against the alternative, I hope you will not feel pressured to make that decision for anyone else’s sake but your own.

    • kns544 says:

      Thank you, Tammy. I appreciate your kind words – especially because you understand it from the lived experience. I think all of us who actually do dialysis should have the freedom to decide how long we want to continue treatment without feeling pressure or guilt. As soon as I gave myself permission to stop when the time comes I felt a humongous weight off my shoulders. On the other hand, I believe part of my mission on earth is to advocate to help develop the things to improve the lives of people with ESRD so that we don’t have to make such drastic decisions. The better options there are for us the better chance we’ll want to live (and enjoy our time living). That is very important to me too.

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